Modestly Good News

Tuesday, December 29, 2015:

Results:

My new treatment regimen is three weeks old now, and my blood is being checked every week at Mayo Clinic (182-mile round trip).  For the first two weeks the myeloma markers went up - the treatment didn't seem to be working at all.  Nevertheless, Dr WG and I agreed  that I would continue on the study for the first eight weeks, then get the scheduled PET scan to get the best possible information about the state of my myeloma.

However (Yay!), my primary myeloma markers went down a bit at the end of this third week.  IgG dropped 12% from 1520 to 1350 mg/dL, and M-spike dropped 7% from 1.4 to 1.3.  These are not big changes, but they go the same direction and therefore are probably real.  I guess we'll find out for sure next week, and the week after, ...

One factor that confuses the measurements a bit is the slow decay of IgG, which has a half life of two to three weeks in the blood stream.  This means that even if the treatment does kill some of the myeloma cells that are spewing out the monoclonal IgG, that IgG stays around for a while to screw up the measurements.

Infusions:

It's hard to believe, but after more than 12 years with myeloma, I had my very first infusion just three weeks ago as part of the current trial.  I had another today.

At Mayo in Rochester, Gonda Building tenth floor, you are brought into a cute little private room (one of many) with a very fancy lounge chair, a TV & remote, extra chairs for my sweeties, outlets to plug in my laptop, and the infusion equipment.  They offer water, juice, and snacks as well.  Next time I'll ask about beer.

I don't have a port or picc line (yet?), so in my case they inserted a tiny needle into a vein on the back of my left hand (I'm right handed).  To hold it in place they covered the entire back of the hand with a clear plastic bandage, then bent the tube around and secured it with medical tape halfway up my forearm.  The infusion felt cool as it began to flow in, but there was no other sensation or reaction.  Thirty minutes later it was all over, as they flushed the very last bit of medication into me with a little saline.  Very easy.

Except: Medical tape of any kind is a problem for me.  If it doesn't tear my ancient skin off upon removal, the adhesive causes an allergic rash that can last for weeks.  So this time I brought my own stuff!

1. Some skin was torn when the bandage was removed from the back of my hand after the first infusion, so I brought adhesive remover wipes (Uni-Solve brand works well) which the nurse was happy to use and which left no torn skin or adhesive residue behind.  
2. When the adhesive tape wrap was removed from my forearm after the first infusion it left an allergic rash that is still not entirely resolved three weeks later, so this time I brought a first aid wrap, a highly stretchable tape that sticks to itself but not to the skin.  That held the tube in place perfectly and left no rash.

The nurse at Mayo told me that they have those items on hand, so I could just ask for them next time.  Maybe I will, but I'll bring my own just in case.

Am I getting good at this?  I don't like the idea of getting good at chemotherapy.  But my sweet wife recently acquired a sign that I see every day:  "if you are lucky enough to be here, you are lucky enough!"  12 years with myeloma, still here, still running marathons, heading into my fourth quarter-century - indeed I am lucky.

Bone Marrow Biopsy

PET/CT scan, PET/MRI scan, 46 vials of blood, two 24-hour urine collections, two more urine samples, ECG, Skeletal (x-ray) bone survey.  That is the list of tests required for qualification and for Cycle 1 Day 1 of my new myeloma therapy trial.  Not to mention height, weight, blood pressure, temperature, walking blood oxygen, and a short physical exam.

I won't name the medications involved in the trial yet because, in case they don't work for me, I wouldn't want to discourage anyone else from using them.  One of them is already a whiz-bang success for certain other cancers.  I can say that the study does involve immunotherapy, meaning that the medications take advantage of my own immune system to dispose of the errant plasma cells that are my cancer.

Tuesday I had an infusion of one medication, and was given capsules of another to take at home.  I have taken those faithfully for three days now, and will drive the 180-mile round trip to Mayo Clinic again next Tuesday to see how things are working out.  And the Tuesday after that, and on and on for a while.  Fingers crossed.

I had such a lovely 7-year ride on Pomalyst, running 60 marathons in 47 states during that time.  Wouldn't another 7 years like that be wonderful?  All prayers accepted.

Two More Bone Lesions

We have known for months now that the (unnamed) oral study regimen I've been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable.  We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra.

Alas, the opposite has happened.  Last Friday's PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max.  Further, there is a "tiny" lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2.  The study regimen works very well for some people, I'm told, but my myeloma isn't fazed by it.  Of course I am now finished with that regimen, and I have other reasons to be pleased about that.

What's next?  I don't know yet.  Happily there is no emergency - according to the doctors all three of the lesions are still small and unlikely to cause a bone fracture soon.  Two doctors at Mayo have agreed with me that Kyprolis and Pomalyst together might be a powerful regimen for me, but one of those doctors said, "that combination will always be available," encouraging me to enter a trial of something new instead.  Moreover, Kyprolis (carfilzomib) is an injection/infusion on two consecutive days each week, for three weeks out of each four, so I would have to arrange my marathoning schedule to be home for that.

Pomalyst gave me a wonderful seven-year ride as a single agent, and I started on it as part of an early study.  I would like to do that again - who wouldn't?  Right now two of the best myeloma specialists on the planet are researching studies that might be appropriate for me, even looking into a particular one that is currently not recruiting.  I expect some news from them soon, perhaps today.

Most certainly I will blog about it.

PET-CT vs PET-MRI

Mayo in Rochester is doing a study of PET/MRI, comparing it with PET/CT for myeloma patients.  A standard full-body PET/CT gives a patient one of the largest doses of radiation of all the imaging procedures, but most of this is due to the CT, not the PET.  The CT is required because the PET doesn't by itself provide enough information to determine where the bright spots from the PET are actually located.  PET doesn't distinguish between bone and soft tissue - it just sees the radioactive sugar molecules that have been gobbled up by active cancer cells.

March 2015 - PET/MRI scanner
arrives at Charlton Building

MRI can see the bones and soft tissue, thereby providing a reference for the PET's bright spots.  While CT uses X-ray technology to make its image, MRI does not, and contributes no radiation risk.  It's noisy and maybe takes a little longer, but safer.

I don't want to make too much of the risk of a PET/CT - some authorities would say that it increases the risk of a later cancer by at most 1 chance in 500 or 1000.  Contrast this with the natural incidence of fatal cancer in the U.S. population, about 1 chance in 5, so one CT or PET/CT is down in the noise.  Repeated CT's add up, though, so Mayo seems to limit PET/CT's to no more than one every six months, which makes it difficult to follow a patient's myeloma.  Hopefully, PET/MRI can shorten that interval.

I've been waiting for months now to find out whether the lesion in my T5 is responding to the current study regimen, so in about two weeks I will participate in the PET/CT - PET/MRI comparison study.  I really want this to work, for my own sake and for all other myeloma patients.

Whining

End of Cycle 5 of the current study medication.

For me this study started in April, and as of two weeks ago I seem to have have little to show for it.  That's why I am not identifying the current study medication.  Also, I am aware that this medication has worked spectacularly well for some other people, and I wouldn't want to scare anyone away from trying it.

Throughout the five months IgG and M-Spike have both hovered around the same values that they had when I stopped using Pomalyst.  Pomalyst was an unqualified success for me, holding my myeloma steady for seven years, until a PET scan finally showed a lesion in vertebra T5, probably from a sub-clone of the original myeloma.

Meantime the side effects of the current study regimen are significant:

• In my case it includes dexamethasone (DEX), which has its own set of side effects, and I can't be certain which come from which drug.
• I take the meds in the evening, so the next day is DEX day.  I have kept track of blood glucose and discovered that a diabetic diet (low carb and slow carb) helps to keep blood glucose down on DEX day and the day after.  Nevertheless I have the other DEX symptoms of high anxiety, loss of sleep, tight voice, bad skin, and more.  DEX was reduced this month from 40 to 20 mg/week, but I don't feel a big change.
• I have lost quite a bit of leg muscle, evidenced in significantly lower running/walking speeds.  DEX is famous for this side effect, but perhaps the study drug is somewhat responsible as well.
• The large muscles in my legs ache, except on DEX day and the day after.  Massage doesn't seem to help.  It's not a disabling pain - just a constant background that can interfere with sleep.
• Peripheral neuropathy has increased significantly, especially in my feet.  They are numb, though not painful, and sometimes they feel as if they are cold, but when I pull off the wool sock and feel them with my hands they are actually warm.
• My normally-dependable appetite comes and goes in the days after the medication is taken - sometimes food doesn't seem very interesting.
• In general, life has lost some of its zest.  The regimen gives me one week off out of each four, and I really do look forward to that week.

It's all worth it though, if the current regimen is reducing the lesion in T5.  Stable is not good enough, the lesion has to be on its way out - other regimens are available.  We'll find out in a couple of weeks, because a PET scan is scheduled with the next visit to Mayo Clinic.  I hope that the lesion is gone or almost gone, because little else would convince me to continue the current regimen any longer.

Two more weeks ...

Scary Run

Wednesday, September 23, 2015:
  
This morning I did a 4-mile walk/run, walking as fast as I could and occasionally running for 20 seconds or so, average pace around 13 min/mi.

In the fourth mile, after two (but not all) of those running periods, I felt a tightness or pain in the center of my chest, beneath the clavicle.  It was not a new feeling - I have experienced a similar feeling before when running and breathing too much cold air.  However, this morning the temperature was 73 and the dewpoint 64.  

In both cases the pain subsided almost immediately when I resumed walking, gone within a minute or less.  I felt no faintness, dizziness, or weakness.

This is DEX day.  Last night I took my weekly dose of the myeloma study drug, with 20 mg of dexamethasone (dosage has been cut in half), and took 0.4 mg of tamsulosin.  I also took a tablet of granisetron, as I was already feeling slightly rocky (almost nauseous).  Then early this morning I took 25 mg of Viagra a couple of hours before the run, and ate four eggs just before the run.  No rocky feeling today, though I have not been very hungry.

This warm-weather chest pain is new.  I have been on this same regimen for five months and have often run on DEX day, without having this pain, though I have rarely taken granisetron the night before a run.  I have eaten four eggs before. The tamsulosin (Flomax) is new, to treat BPH.  By afternoon I had contacted my primary doctor.  He wasn't quite ready to order a stress test yet, and this plan developed:

• Do exactly the same run tomorrow, with the four eggs and with the tamsulosin, but without the weekly study drugs or the Viagra.  If symptoms reappear, then the problem is not the myeloma study drugs.  If they do not, then wait and see.
• If necessary, do the same eggs/run/walk test again, but without the tamsulosin.
• If symptoms still reappear, then perhaps it's time for the stress test.

Overnight:

  

Last night I had heartburn (reflux) which woke me from sleep - very unusual for me.    Were yesterday's running incidents also just heartburn?  Since it has not happened before, perhaps I wouldn't recognize it during a run.  Running is known to be a cause of exercise-induced heartburn, and could have been a contributing factor.

  

I am beginning to suspect the tamsulosin as a contributing factor.  Few medical references list heartburn (or reflux, or GERD) as a potential side effect of tamsulosin, but many references do list heartburn as a side effect of alpha blockers, and tamsulosin is an alpha blocker.   Granisetron is also known to cause heartburn for some people.

Today, Thursday, September 24, Second Run: 

Today I repeated yesterday's run, almost exactly, even eating the four eggs shortly beforehand. 
I did take the tamsulosin last night, but no myeloma study drug, DEX, granisetron, or Viagra.  I experienced no chest symptoms, so none of the drugs are off the hook as contributing factors.

I'll keep taking the tamsulosin for BPH, and wait and see if the chest symptoms appear again.  

End of Cycle Two

Tuesday, June 16, 2015:

I have been on a trial of a new oral regimen for two months now, and I am a little disappointed to report that there is no significant change in my numbers.  My IgG dropped from 1230 to 1190 mg/dL this month, and M-Spike from 1.2 to 1.1 g/dL, but both of those values are well within their recent variability.  The good news is that the numbers didn't go up!

Dr L tells me that this particular treatment regimen may take a while before it has a significant beneficial effect - several cycles perhaps.  I'll wait I guess - not much else to do.

All of the other numbers are OK.  Platelets are 144 billion/L, slightly below the reference range of 150 - 450 billion/L, but apparently nothing to fret about, so I don't.  Neutrophils and the rest of the white cell counts are dandy, red cells are fine.

Of course we don't know anything about the lesion in vertebra T5.  We can only see it with a PET scan, and we don't do those very often because of cost and also because of radiation exposure.

Peripheral neuropathy is an issue.  My feet feel somewhat numb, a little more than before this new regimen, and they tingle a little, but so far no pain.  I am keeping them warm and busy in hopes of slowing the nerve damage that causes the neuropathy.

In the meantime I am physically quite active with walking, running, cycling, and lawn mowing, living a life of quality and trying to keep the DEX (part of the new regimen) from disassembling my muscles.

End of Cycle One

Tuesday, May 19, 2015:

For most of the last seven years on the previous regimen I was happy when the results at the end of a cycle were the same as the results of the previous cycle.  "Still stable" was the byword.  We only changed regimens because of a T5 spinal lesion found by a PET scan.  I had hoped, though, that the results of this first cycle of the new regimen would show improvement, a reduction in IgG or M-spike, preferably both.

Results:

Nothing much yet.  Today my IgG was 1230 mg/dL, actually up just slightly (within measurement tolerance) from recent months, and M-spike was 1.2 g/dL, about the same as recent months.  No change there, but still stable.  Dr L did not seem concerned, pointing out that this regimen isn't as likely as other regimens to produce quick, dramatic results.

Something strange did happen to light chains though.  Both Lambda and Kappa went down, but Kappa went WAY down to a fifth of its value of five weeks ago, now below the bottom of the reference range at 0.3 mg/dL.  Dr L was not too concerned about that, and in fact said it means that something is happening!

We'll just have to wait another month.  Steady as she goes.  I'll be a patient patient.

PET Scan Lesion in the T5 Vertebra:

We will wait at least six months to look at this lesion again, because it can only be seen as a sugar-sucking bright spot on a PET scan.  PET scans are expensive and radiation intensive.  This is a dime-sized lesion in a bone that is actually fairly large, so Dr L didn't think that it seriously weakens the vertebra yet.

I asked if it is likely to be a new and different clone (since it showed up while IgG and M-spike were stable).  Dr L used the term "sub-clone," and said it is quite possible.  If so, however, we may not know soon because we cannot biopsy it, hidden behind the spinal cord from the back, and the lungs and aorta from the front.  We have to treat systemically.  My hope is that the new sub-clone is more responsive to the new regimen than the original clone was after this first cycle.  Hey, it could happen!

Neuropathy:

I have now heard from two friends who experienced painful neuropathy in their feet on my current regimen.  In contrast, however, Dr L said that only about 10% of patients have that experience.  So far I find myself in the 90% group - I feel some numbness in my feet and a slight tingling in my fingertips, but I'm not sure that either symptom is worse than it was before I started this regimen.  There is no pain and no loss of function yet.  I'm keeping my feet warm and busy, plus lots of Vitamin B.  Next month I will have an appointment with a Complementary Medicine doctor at Mayo, to discuss other neuropathy treatments and practices.

Platelets:

Platelets were lower than usual for me today, 134 k/uL, slightly below the bottom of the reference range, even though two weeks have passed since the last dose of the new drug.  On the previous regimen neutrophils were at risk, though mine never went below the study cutoff.  This regimen is more likely to affect the platelets, so if that count goes too low I could be at risk for internal bleeds.  Happily, this most-recent current platelet count is still well above the study cutoff of 25 k/uL.

Nevertheless I will be careful - as recommended by a knowledgeable Mayo pharmacist I have gone off aspirin and other supplements that could influence clotting.  Again this month I will be getting a CBC done locally prior to each new dose of the medicine.  If platelets (or anything!) are below the cutoff, we will stop the regimen at least until the numbers come back up again.

Plasma Cell Proliferation:

One of the results obtained from the bone marrow biopsy of five weeks ago is the Plasma Cell Proliferation Report.  This stuff is well above my pay grade (I am most definitely not a doctor), but as I understand it, "flow cytometry" is used to examine biopsied plasma cells more or less one-by-one.  Those cells which are determined to be monotypic (the myeloma cells) are examined by "quantitative DNA analysis" to see if they are in S-phase (in the process of dividing into two cells).  Dividing is bad - that's how cells multiply!

My report says "Monotypic Plasma Cells S-phase: 0.3%.  This means that about one third of one percent of the myeloma cells in that bone marrow biopsy on that day were dividing.  According to Dr L, that is actually a good number - my plasma cells are not going hog-wild on me (I believe the doctor used a medical term).

Further, this result corresponds closely to a 2008 biopsy result called the Plasma Cell Labeling Index, then used at Mayo Clinic but now mostly replaced by this flow cytometry result.  Still further, only one clone was detected - no new ones.  Meaning?  The plasma cells in that hip may not have changed much in 7 years on the prior therapy.  It is quite possible, though, that the cells in the T5 vertebra are a new clone, and we can't know yet how fast those might be dividing.  Fingers crossed.

Study Completion:

The Consent Form that the doctor and I signed does not mention a completion date for the study itself.  According to ClinicalTrials.gov, however, this study will reach completion in July of this year.  Dr L discounted that, thinking that's just the date at which the study will stop accruing patients, and the study itself will likely continue at least until the FDA approves the drug.

Day 21 of Cycle One

The trial specifies treatment doses on days 1, 8, and 15 of each 28-day cycle, the oral Primary drug plus dexamethasone (Dex) 40 mg.  I have taken all of those pills, and today is the sixth day after the last dose:

• Myeloma results:  No information yet.  That's next week, on Tuesday, which is also Day One of Cycle Two.  Hope hope.
• CBC Today: Good. White cell count is entirely normal, neutrophils especially, and platelets are above the bottom of the reference range.
• Peripheral neuropathy:  Just before starting this trial I chanced upon a myeloma friend who had been on the same trial, but had to stop it because of painful neuropathy in his feet.  He said that it started with numbness.  I already have a slight numbness in my feet from prior therapies, so I have been very alert to changes, but so far have not felt any changes.  Fingers crossed.
• Headache:  Yes, when coming off Dex, occasional and easily treated with naproxen (Aleve). 
• Nausea, other stomach issues, rash, infection:  None.  I took one anti-nausea pill before the first dose, and none since.

So far this has been an incredibly easy regimen to take.

I'll post again when the myeloma results (IgG and M-Spike) are known.  The recent PET scan spotted a lesion in my T5 Vertebra, but I probably won't know the fate of that lesion for some months.

Day 6 of Cycle One

Wahoo!

Good CBC.  As part of my new myeloma regimen, we do a CBC with differential at the end of each of the first three weeks, just before taking the next dose of the Primary Drug.  I get that done at the local clinic, with the results sent to Mayo Clinic.

I'm not a doctor, but I know what my doctors want to see in the CBC, and by that standard I'm doing great:

• White blood count is 5.8 k/uL, higher than I remember seeing it in years and well within the reference range.  
• Neutrophils, which have been lower than they should be and which we have watched with apprehension, are 3.5 k/uL, perfectly normal.  
• Platelets are 172 k/uL, on the low side but about where they have recently been and also well within the reference range.  

We don't yet know if the first dose of this new regimen is fighting the myeloma, but the CBC at least suggests that it isn't hurting me.  I don't yet detect any side effects from it.  Tomorrow I'll take the second dose.  Three weeks from now we'll find out what is happening to IgG, M-Spike, and light chains.  I don't know when we'll look at the bright spinal lesion revealed by the recent PET scan, but PET is the only way to see it, so I hope we'll do that in a few months to confirm that the light has been extinguished.

Day One of Cycle One

I'm now on a study of a new drug (Primary drug), along with dexamethasone (Dex).  I take both once per week for three weeks, then one week off from the Primary drug, then repeat that cycle.

Yesterday was Day One.  We drove 100 miles to Mayo Clinic in Rochester for no reason other than to pick up the pills of the Primary drug (they wouldn't Fedex them), then waited 3 1/2 hours to pick them up, which normally takes less than an hour (not Mayo Clinic's best day, grump grump).  But we got back by dinner time, to take them as follows:

• Dex with the evening meal: ten tiny 4-mg tablets = 40 mg.
• Wait an hour and a half after finishing the meal and my one beer.  I asked - the pharmacist said beer is food.  Tsk.
• Take a Kytril tablet (Granisetron) against possible nausea.
• Wait another half hour.
• Take the Primary drug.

This study has two arms which vary in the amount of the Primary drug. Apparently I'm in the high-maintenance arm, more likely to have side effects I'm thinking, but possibly more effective as well.  OK with me, because they'll drop the dosage if I run into trouble.  I want to see that PET Scan spot (lesion) on my T5 vertebra go away.

So far, on day 2, also known as the morning after, NO Problems:

• My biggest concern is neuropathy, but after just one day I certainly wouldn't expect any neuropathy, and there is none.  I have just a little neuropathy anyway in fingers and feet, and that actually seems to be less today.  Perhaps the Dex is improving it temporarily - Dex is a powerful anti-inflammatory among other things.  Seven years ago the Dex with a different regimen cured my chronic headaches, apparently for good.
• I experienced no nausea.  The prescription suggests taking one pill just before taking the Primary drug, then another 12 hours later.  I skipped the second one.
• I slept well, despite the drugs.  Dex, especially, makes that difficult for some people - I'm lucky.
• My blood oximeter displayed 97% with a heart rate of 55, both this morning and this evening.  Prior to this therapy, for the last seven years, those numbers would usually be about 98% and 44.  Heart rate is low because I'm a runner, with stronger than usual "cardiopulmonary function," according to the docs.  We'll see what they are during the week, off Dex.
• In addition to neuropathy, the drugs can cause a drop in platelets and neutrophils, among others.  For this first month I will get weekly CBC counts.

I felt WONDERFUL in my run this morning, and ran faster than usual, an effect of the Dex.  It's like waaaay too much coffee.  I've had Dex before, and if experience teaches anything I won't feel quite so wonderful tomorrow, as the Dex effect wears off.  I'll let you know.

New Regimen

After seven years my myeloma has finally made an end run around my dear friend Pomalyst and found a way to hurt me.  The previous post shows the PET scan of the hot little lesion that threatens to hurt my spine.  Pomalyst is still working, you might say, because the blood markers IgG and M-Spike continue to be stable.  Nevertheless the T5 lesion appeared, so something must change soon, and I am enrolling in a study of a new drug.

Enrollment in the study is tomorrow, Tuesday, with a battery of appointments:

1. Urine test
2. Doctor visit
3. Bone marrow biopsy
4. Electrocardiogram
5. Chest X-Ray
6. Blood draw for who knows what
7. Skeletal bone survey
8. Second doctor visit
9. 30-minute study (don't know what this is - maybe the pill pickup?)

This basically takes all day, but I'm very happy that they made it all fit into one day because it's nearly a 2-hour drive for us each way.

I consider myself an exceedingly lucky myelomiac, because once again the myeloma menace was discovered before it really hurt me.  There was no way to find this nasty little hot spot except a PET scan, and those are not performed routinely.  Had the scan not been done, most likely I would eventually have broken that vertebra, requiring surgery and possibly resulting in serious permanent injury.  Lucky.

  

Patient advocacy did play a part in the luck, though.  For seven years, on the anniversary of my start in the Pomalyst trial, I have requested some sort of check on the bones, be it an X-Ray survey, a DEXA scan, or a PET scan.  This year the PET seemed appropriate because of a minor pain in the lower back.  Nothing was found down there, but the T5 lesion up by the heart changed everything.

A fond farewall to Pomalyst, which has protected me through 60 marathons, including one in each of 47 states.  We were hoping to get to 50 states on Pomalyst this year, needing only Wisconsin, Illinois, and Nevada, but that will have to wait.  Anyway 47 isn't bad.  Perhaps we'll see Pomalyst again some time, probably in combination with something equally effective.  Meanwhile we keep running.

Seven Great Years

I started on a trial of Pomalyst seven years ago, 92 cycles ago, starting with CC-4047 (now Pomalyst) and dexamethasone (DEX) but most of the time taking 2 mg of Pomalyst daily as a single agent.  It's still keeping the M-Spike down to 1.1, but a PET scan on Tuesday revealed a small but bright (very active) myeloma lesion in the T5 vertebra.  This means that the current regimen is no longer working, my spine is at risk, and something has to change.

Copyright (c) 2015 Mayo Clinic

The image shows a cross-section of my body laying on my back, the view slicing through both arms and the chest, including the lungs (black) and with the T5 vertebra at the bottom.  The brightest spot is the myeloma, just above the spinal cord in the vertebra.

This image is copyrighted 2015 - no one has permission to display it online or anywhere else.

Dr L called this evening and we had a wonderful conversation.  Some points:

• This may mean that the myeloma has mutated in that location, or that a pre-existing clone, resistant to Pomalyst, has finally raised its ugly head there.
• Either way, this lesion has to be treated, both to protect the spine and to keep the new clone from taking over.
• There is no way to know how fast the lesion is growing, so sooner is better than later.
• The lesion is not accessible by needle (for a biopsy or for treatment), because the lungs and aorta are in the way from the front and side, and the spinal nerve bundle and bone prevent access from the back.
• Dr L didn't think it was a good target for radiation therapy, feeling that a systemic treatment should be tried first.
• This lesion probably cannot be seen by x-ray.  The hole in the bone might be seen by CT-scan, but that wouldn't show whether the myeloma was still active, so the only way to confirm a successful treatment will be another PET scan showing that the sugar-sucking bright spot is gone.

Here are three interesting treatment possibilities:

• The study started with Pomalyst and dexamethasone, so why not just add DEX back to the regimen?  This would be the most conservative approach, but I'm not enthusiastic about it because I think the bright little lesion needs more aggressive treatment.  I really really want to stomp it out.  Really.
• How about adding a few cycles of Kyprolis to the Pomalyst (with DEX), and then going back to Pomalyst maintenance if that regimen succeeds?  This approach might work, as Kyprolis and Pomalyst are a very potent combination.
• There is a study of Ixazomib (MLN9708) with DEX at Mayo Clinic.  Ixazomib is a new oral proteasome inhibitor which appears to be very active against myeloma with few side effects.  The study regimen includes DEX, but not Pomalyst.  Mayo is checking to see if I am eligible.

There are other choices, of course, several others.  We exclaimed about the abundance of therapies available now, compared with those available 12 years ago when I was diagnosed.  Even thalidomide was then available only in a trial, and there was no Pomalyst, Revlimid, Velcade, Kyprolis, or (several others).

How to choose?  My personal goal is to stay alive and competent for as long as I can benefit my wife and daughter.  I believe that's my purpose here on earth, so all medical decisions are made with the advice of a great doctor and with that goal in mind.

Dr Martha Q Lacy, Woman of the Year

The Leukemia & Lymphoma Society (LLS) combats all blood cancers, including myeloma, supporting research as well as the patients themselves.  Every year the LLS holds a Woman (and Man) Of The Year competition, to raise funds and to honor the nominees.  Dr Lacy is a nominee this year.

Martha Q Lacy, M.D.

Dr Lacy has been my doctor for the last seven of my 12 years with myeloma.  She introduced me to a trial of Pomalyst, the drug that has kept me up and literally running for all of those seven years.  More importantly, she is the Chair of the Division of Hematology at Mayo Clinic, a Professor of Medicine, a frequent speaker at conferences of the American Society of Hematology, and doctor for hundreds of other myeloma patients.  She's the real deal.

Recommended reading:  Here is a copy of a letter that we received from her a few days ago: lacyletter.html.

If you would like to honor Dr Lacy in the LLS competition, and help all of us blood cancer patients to boot, please go to her secure fundraising web page.

Thank you!

Don

Kit Draw

That's what they call it.  For the first time in 92 cycles of Pomalyst, we three did not drive the 200-mile round trip from home to Mayo Clinic and back.  Instead we agreed with Mayo that the blood draw could be done at a local clinic.  Mayo, however, still wanted to use their own lab for the critical measurements of IgG, M-spike, and maybe some others.  This is how it worked:

• A couple of weeks ago Mayo sent me a cube-shaped box (kit), perhaps 10 inches on all sides, containing five vials, instructions, a FedEx overnight return label, and a freezable gel block about the size of a pound of hamburger.  Instructions said to do the draw on March 9.  
• Just to check, I stopped in at the clinic a week or so ago, showed them the box, and asked about the kit draw.  "Oh yeah, we do that all the time," was the response.  
• I froze the gel.  
• On March 9, Monday afternoon (fasting!), I put the gel back in the box and took the whole box to the local clinic.  The two people at the lab desk were unfamiliar with the process but they read the instructions and were game to do it, if I would stick around for an hour or two and carry the completed kit to the FedEx office a half mile away.  It might take that long because the instructions required them to centrifuge a couple of the samples.
• While I waited, though, we encountered a more seasoned technician who had indeed done this before, and who informed us all that the clinic has a regular, scheduled FedEx pickup every afternoon.  So I left it all in their good hands.  
• By Tuesday afternoon the results were available for my viewing in my Mayo Clinic account, looking very much like my usual results.

In particular IgG was down slightly, from 1270 to 1210 mg/dL, and M-spike from 1.2 to 1.1 g/dL.  Down is better than up, but I'm thinking that both of those changes are probably within the margin of error for their tests, so the differences are not significant.  Stable = boring = wonderful.  Life is good.  I feel like going out for a run.

FDA Approves Farydak (Panobinostat)

This is a victory for myeloma patients, and perhaps for all patients facing a life-threatening disease.

Farydak (panobinostat) is a new oral drug approved specifically for use with bortezomib (Velcade) and dexamethasone to treat patients who have previously undergone at least two prior regimens, including Velcade and an immunomodulatory agent (thalidomide, Revlimid, or Pomalyst).

It comes with this boxed warning:

In other words it can be very unpleasant and can put your life at risk.  Further, in addition to the symptoms listed in the box, it can cause a reduction in platelets, neutrophils, or red cells, and can cause other serious problems.

So why is this a victory for patients?  Because Farydak can extend the lives of patients taking Velcade by months, perhaps years, that's why.

Nevertheless, last November the FDA Oncologic Drugs Advisory Committee (ODAC) voted 5 to 2 against approval of Farydak, judging that the potential benefits did not outweigh the risks.  This is a panel of "experts" (not a patient among them) deciding by themselves what risks WE patients should be permitted to take, and attempting to block us from all access to this drug.  In a recent speech I said "for people in my shoes, the side effect of NOT having the drug is worse – we call it death"!  

All of the new FDA-approved drugs have a daunting list of possible side effects, but we take them anyway because we don't like the alternative.  And as a result the median survival for myeloma patients has doubled during the 12 years since my diagnosis.  In my own case the advertised side effects of my little magic pill have been mostly absent - I've run 58 marathons now in my seven years on Pomalyst.

I congratulate the FDA on their understanding of this issue and their willingness to let us, with our pretty damn smart doctors, make the life-determining decisions ourselves.  This seems new, and I hope it is a harbinger of things to come.

Farydak is new too.  It works on an entirely new principle - it's called a histone deacetylase (HDAC) inhibitor - with the potential to be combined with any of the drugs that work on other principles. There is much to be learned about Farydak.  I hope I never need it, but I'm glad to have it in my quiver.

For more about access to emerging treatment technologies, please visit Closing the Gap Now .

Pomalyst Study Ends

But I'm still on Pomalyst, 2 mg daily with no days off, thanks to insurance.

Somewhat to our surprise, Mayo Clinic abruptly cancelled my participation in the study at the visit which ended my 89th 28-day cycle.  As far as I know the drug manufacturer, Celgene, was prepared to continue the study, but Mayo explained that they needed the resources elsewhere.

I headed home from that last visit with no meds and wondering how or when I would get them, and also wondering if or when I would have any appointment.  Happily, answers to those questions came in a few days (after some phone calls) and treatment is back on track.  My copay is quite manageable, and of course I'm aware that there are organizations that will help with the copay if I seek help.

I've now had my first "regular" appointment at Mayo, where we established a new schedule:  I will continue to get myeloma markers checked every month, but will actually drive the 200-mile round trip to Mayo only every second or third month, otherwise mailing in the blood samples and getting the results online.  The next Mayo visit will be in April and we will do either an x-ray bone survey or a PET scan at that time, to be determined after this upcoming marathon.

This time Mayo chose to do my CBC in the morning, together with all of the other blood tests, and found that the neutrophil count was barely above the lower limit of 1.0 k/uL.  We decided to go back to our earlier practice of taking the CBC the afternoon before the visit, because the afternoon neutrophil count is usually double the morning reading.  The neutrophils are there in the morning too of course - they apparently just don't like to get up early.  There may be a better medical explanation for that.

Results from the last study cycle and this first regular cycle indicate that the myeloma is still stable, with an IgG of 1270 mg/dL and M-Spike of 1200 mg/dL (1.2 g/dL).  Both of these values are within the range of values seen recently.  The myeloma will probably take over someday, but not yet.

At a gluten-free restaurant called Nourish in Gilbert, AZ.
That dressing is lime-based, perfect for the salmon and the salad.